Michelle and Colbey's story

When Michelle’s son, Colbey, was 10 years old, he started to complain of a pain in his arm. At first Michelle thought it was growing pains, but after a few weeks she became concerned. An initial X-ray didn’t reveal anything.

But when Colbey’s pain flared up worse than before, Michelle took him back to hospital. It turned out that a tumour on Colbey’s bone had been missed, and he was diagnosed with Ewing’s Sarcoma. The diagnosis came just a week before Christmas.

going through treatment

Colbey’s treatment began the day after Boxing Day. Michelle describes treatment as “a never-ending cycle”.

“The cancer was aggressive, so the treatment needed to be aggressive,” Michelle explains. “We had six rounds of chemo in the first treatment block, with three infections and three extra hospital stays in there. I felt that between January and April we were in the hospital almost every day.”

After four months of chemotherapy, Colbey went in for an 11-hour bone graft surgery, in which surgeons took the small bone from his leg and put it into his arm. He came out of surgery with his leg in plaster and a metal frame attached to his arm.

Soon, Colbey’s chemotherapy treatment began again. “As soon as the wound started to heal, we were back to chemo. And every time we had chemo, chemo would knock back the healing,” Michelle says, explaining how for the next three and a half months, Colbey was being transported to and from the hospital by ambulance as his frame wouldn’t fit in the family car, and spending his time at home in a bed set up in the lounge room. “Lots of pain. Lots of screaming. Lots of anger. It was tough.”

Redkite’s support

The first time Colbey and Michelle were in hospital, Michelle was given a Red Bag. “In it was everything you could possibly need for an emergency hospital stay, or that you may have forgotten to pack,” says Michelle.

They were also supported in hospital by a Redkite-funded social worker. “If you don’t know who to go to, if you don’t know the answer to a question, if you’ve got any worries or concerns, [she] was only as far away as an email or a phone call.”

Their social worker told Michelle about other support Redkite could provide, “[She] told me that I could access some extra funding to help with the bills. I wasn’t working much at all… [She] said, ‘Hang on, I can help you out here. We can put you in for some Redkite funding’.”

Michelle continues “I got Coles vouchers sent to me, I got petrol vouchers sent to me and that kept us afloat… So Redkite certainly fed us, and made sure I had petrol in the car to get to the hospital visits. And [our social worker] would turn up just to check on how we were. So it wasn’t just the financial stuff and the practical stuff... [Our social worker] was one of the first people to stick her head up and say 'Are you okay? Do you need anything?’ [She was] a lifesaver, as much as the doctors and the nurses.”

connecting through music

Redkite also provided a music therapist for Colbey. “He loves AC/DC, Bon Jovi, the louder the better. So the first time the music therapist came around Colbey kind of went 'I’m too cool for that kind of stuff'. [But she] was not to be dissuaded."

"She came back the next day with a little drum kit. And off they toddled to the adolescent play area, and Colbey was drumming his heart out to AC/DC and Bon Jovi."

"From then on in, they had this special connection. And even when Colbey was so sick that anyone else that would turn up to his room, he would send away, the music therapist was always allowed in.”

a new kind of normal

After physio and hydrotherapy, Colbey eventually regained limited movement in his elbow, and has now finally been given permission from his surgeon to do “anything mum allows”.

While still coping with some effects from chemotherapy including nausea, fatigue and weight gain, Colbey is now making it to school almost every day and looking forward to starting Year 7.

“You’re trying to get them back to normal and let them know they can just be a kid,” says Michelle, adding that she has been amazed by the resilience of the children she and Colbey met through their cancer journey. “They’re all amazing. They astound me.”

- March 2015

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